Latest news from JWRG


March 21, 2019

American Society of Nephrology Announces Studies Examining Ways to Assess Quality of Life in Patients with Kidney Disease

Washington, DC, March 21, 2019 – In a press release, the American Society of Nephrology reports that in addition to monitoring patients’ health through specific clinical tests, physicians should also consider patient-reported outcomes and health-related quality of life, or what patients say about how they feel and what they can do. Two new studies that appear in an upcoming issue of the Journal of the American Society of Nephrology (JASN) address ways to do this for patients with chronic kidney disease (CKD). To gain these perspectives from patients with CKD, physicians often use the Kidney Disease Quality of Life (KDQOL)-36, a survey that asks patients for their views about their health. Despite its widespread use, the KDQOL-36 was developed decades ago and may not capture all of patients’ concerns. In a JASN study that included 485 patients with CKD, John Ware, Jr., PhD (John Ware Research Group) and his colleagues developed and evaluated an improved and briefer approach to measuring quality of life across the spectrum from early CKD to kidney failure, or end-stage kidney disease (ESKD). The team found that both 6-item and adaptive forms of this Chronic Kidney Disease Quality of Life (CKD-QOL) instrument performed better across multiple tests of validity in head-to-head comparisons with a generic assessment of health-related quality of life called SF-12v2 and with CKD-specific KDQOL-36 measures. “Quality of life is the most important outcome to patients, and the computer adaptive survey pays attention to a patient’s answers, saves time, and doesn’t ask questions that […]
March 21, 2019

Leading Clinical Journal Article Shows That New and Briefer Disease-specific Quality of life (QOL) Measures Are Also More Clinically Valid

WATERTOWN, MA, March 21, 2019 – JWRG’s efforts to improve disease-specific health-related QOL measures by broadening item content, strengthening psychometric methods and maintaining 1-minute response times can also make QOL measures more valid and useful clinically, according to a study of patients with chronic kidney disease (CKD) published today in the Journal of the American Society of Nephrology (JASN). Overall, compared with currently-used KDQOL-36 CKD-specific and generic SF-12 measures, new 6-item and computerized adaptive test (CAT) summaries of CKD-specific QOL impact performed better across multiple tests of clinical validity. New CAT surveys were more efficient than fixed-length surveys and were the only measures better in every clinical test. As Dr. John Ware, JWRG’s Founder and Chief Science Officer, noted in his comments to the American Society of Nephrology “Quality of life is the most important outcome to patients, and the computer adaptive survey pays attention to a patient’s answers, saves time, and doesn’t ask questions that are irrelevant to that individual patient. This research brings us closer to measures of quality of life that are specific to kidney disease and could meaningfully inform the care of individual patients.” The JASN study included 485 CKD patients (non-dialysis Stages 3-5, on dialysis, post-transplant) from 12 sites across four states.  JWRG researchers collaborated with researchers at Tufts Medical Center to compare JWRG’s approach to CKD-specific health-related quality of life measurement with currently-used KDQOL-36 CKD-specific and generic SF-12 survey measures.  The new approach summarized QOL impact attributed to CKD across six QOL domains in a […]
September 10, 2018

Ware Lecture Tour in Japan

September 29th – October 26th, 2018 | Kyoto, Sapporo, Tokyo, Isehara, and Nara City in Japan Dr. Ware will present a series of lectures at conferences and university medical schools in September and October.  Lectures begin with a September 29 plenary keynote entitled “Patient-reported Health Measures are Linking Treatment Outcomes to Population Health” at the Society for Clinical Epidemiology annual meeting in Kyoto followed by a September 30 lecture on new JWRG disease-specific and generic health-related quality of life measures translated for use in population surveys and clinical research in Japan.  New surveys include a 10-item quality of life (QOL) short-form (QGEN®) developed in the US as an improvement over the SF-36® Health Survey and being normed in Japan, and a new 7-item QOL Disease-specific Impact Scale (QDIS®) that uses disease-specific attributions to increase validity and responsiveness to one condition in the presence of multiple comorbid conditions.  Dr. Ware also will comment on the history of conceptualization and measurement of QOL and important new survey tools and computerized adaptive test (CAT) developments in Japan, US and elsewhere at the Kyoto meeting and in subsequent lectures at Hokkaido University in Sapporo (October 3), Tokai University in Isehara (October 19), Kyoto University (October 22), and a symposium entitled “Consider QOL for Diabetes Patients” at the Ligare Kasugano hotel in Nara City (October 26) sponsored by MSD K.K. These lectures will cover the more than 40-year evolution of conceptualizing and measuring patient-reported outcomes (PROs) and noteworthy milestones. Advances include: applications of item response […]
September 10, 2018

Measurement, Design, and Analysis Methods for Health Outcomes Research Course: Ware Lecture

September 24th-26th, 2018 | Harvard School of Public Health, Boston, MA Dr. Ware will present his annual lecture entitled “New Techniques for Health Outcomes Measurement and Evaluation” at the Measurement, Design, and Analysis Methods for Health Outcomes Research course held from September 24-26 at the Harvard School of Public Health. The lecture will cover the 40-year evolution of survey content and noteworthy milestones in the history of conceptualizing patient-reported outcomes (PROs), as well as the most innovative and important methodological advances.  The latter include: applications of item response theory (IRT) and waves of development of very homogeneous item banks that require increasing the number of generic PRO scales; contrasting efforts to develop summary measures that each cover a wider range; new “super” short-form items that improve psychometric performance over legacy tools; and standardized IRT-based metrics common to new and legacy generic PROs.  A new generation of more valid and responsive disease-specific PROs will be discussed.  These new methods, which are standardized across diseases and norm-based, yield a summary score that fills the gap between disease-specific symptoms that are not QOL and generic QOL measures that are not disease-specific.  A new kind of adaptive survey logic that automatically adapts to the presence of multiple conditions will be discussed as a more practical solution to integrating disease-specific and generic measures into a common “dashboard” of PROs. 
May 31, 2018

A 3-minute narrated slide show of alternate forms of JWRG’s Disease-specific QOL Impact Scale (QDIS®) now available

WATERTOWN, MA, MAY 31, 2018 – Dr. John Ware, the developer of QDIS®, recently demonstrated and explained its alternate forms now in use.  A 3-minute slideshow summary with Dr. Ware’s narrative is now available for viewing here. All QDIS® forms broaden the content of disease-specific health-related quality of life (QOL) impact measures and use standardize scoring based on norms for the chronically ill US population. Now available are static and computerized adaptive test (CAT) forms that automatically adapt to the presence of multiple comorbid conditions (MCC) and the impact of each condition. Output scores include QOL impact for each condition, the first disease-specific QOL impact profile standardized across diseases and the first individualized, aggregate MCC total QOL impact score.
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